To my internet connection, at least for now. Trying to get to a point where I can sell some of my stuff on ebay. I have lots of stuff. Way too much stuff.
Still waiting to hear back from NIH. My doc mailed the referral letter almost two weeks ago, so not time to start worrying yet. Waiting on Social Security. Waiting on long term disability. Waiting, waiting, and running out of money fast. Running out of time to catch up on my mortgage payments.
Waiting and running out of time and money.
I have the rashes and itching to keep me occupied. It's gone into overdrive. And I dare not use the corticosteroid to tamp it down since I know the doctors will want to see them in their full and festering glory.
I'm trying to keep a good perspective and not devolve into a depressed, overwrought heap but I'm out of all of my anti-depressants except for the affordable doxepin. I have an appointment with a free clinic on the 31st and they will provide meds, so I'm hangin' on until then.
Thursday, May 24, 2007
Friday, May 04, 2007
Dr. Akin and U of Michigan
Dr. Akin did reply promptly and was very helpful. U of Mich does bill your insurance for the tests and does not pay transportation costs but he says there are organizations to help with such costs which TMS has info about. He suggested I contact them for info about an NIH study.
Not having insurance, U of Mich was not a good match for me. I contacted Valerie Slee who is over Research at TMS (The Mastocytosis Society) and right away she put me in touch with Dr. Robyn who is over a similar study for the NIH, and they do cover transportation and all testing and medication costs. Thank you Val and TMS and Dr. Akin!
Hallelujah!
My doctor is sending them a referral letter with my records for review in determination for my qualification for the study.
Keep your fingers crossed for me.
Meantime, I am still scrambling trying to find assistance resources while I try to get approved for Social Security. Got foodstamps, but do not qualify for Medicaid until approved as disabled by Social Security.
I was referred to Communi-Care which helps with medical expenses, but it is for the working uninsured. I'll try them and see what might happen.
Apparently, today in America, if you are too sick to work and can't afford your medication, until you can get approved for Social Security which can be time-consuming and very difficult, you may as well lay down by the side of the road and die.
Sorry for the pessimism. I'm trying really hard to not be that way. The stress of all this is making me terribly sick, not to mention having weather that is 80+ degrees one day and 55 degrees the next while I'm trying to run from DSS to SSA to doctors offices, etc. and both heat and cold are triggers. Plus, I can't even describe how difficult it is to fill out all this paperwork and talk to all these people when my brain is so foggy that I barely know my own name.
For example, I went to a free clinic to apply on 5/2/07. My DOB is 4/20/57. I signed in and was supposed to put my DOB. I wrote 4/22/07 because DOB had registered with me as today's date. AS IF 4/22/07 WAS 5/2/07! When this happens, usually I know I've done something wrong, but I have to stare at it for long seconds before it registers. Finally, I realized I was supposed to put my DOB. I wrote 4/20/07, thinking I had corrected it. Duh, no. Not unless I was 12 days old. I was too embarassed to change it again.
Then to the paper work. First up, sign and date form. I wrote 4/22/07 AGAIN!!
These are not the actions of a coherent individual. But typical of me these days, increasingly more so. My family is becoming adept at translating me.
If I'm trying to mention an individual, say Tom Hopkins, I'll more often than not have to say "his name is something like Bob Haskitt" and they have to guess until they figure out who I'm talking about.
If I'm driving to K-Mart, I'll end up in the Target parking lot wondering why the hell I'm there. I'll pull into a fast food place and drive right by the speaker and directly up to the window.
All of which is scaring the hell out of me. I'm afraid that if I don't have masto, then I might have brain tumor. If a brain tumor might also cause chronic itching, rashes, diarrhea, stomach aches, gastritis, rhinitis, sinusitis, bone pain, body aches and major fatigue.
But, I have no insurance and no money. If I cannot get into the NIH soon, I'll have no choice but to have to go to the hospital emergency room as an indigent patient, I guess.
Please pray for me.
Not having insurance, U of Mich was not a good match for me. I contacted Valerie Slee who is over Research at TMS (The Mastocytosis Society) and right away she put me in touch with Dr. Robyn who is over a similar study for the NIH, and they do cover transportation and all testing and medication costs. Thank you Val and TMS and Dr. Akin!
Hallelujah!
My doctor is sending them a referral letter with my records for review in determination for my qualification for the study.
Keep your fingers crossed for me.
Meantime, I am still scrambling trying to find assistance resources while I try to get approved for Social Security. Got foodstamps, but do not qualify for Medicaid until approved as disabled by Social Security.
I was referred to Communi-Care which helps with medical expenses, but it is for the working uninsured. I'll try them and see what might happen.
Apparently, today in America, if you are too sick to work and can't afford your medication, until you can get approved for Social Security which can be time-consuming and very difficult, you may as well lay down by the side of the road and die.
Sorry for the pessimism. I'm trying really hard to not be that way. The stress of all this is making me terribly sick, not to mention having weather that is 80+ degrees one day and 55 degrees the next while I'm trying to run from DSS to SSA to doctors offices, etc. and both heat and cold are triggers. Plus, I can't even describe how difficult it is to fill out all this paperwork and talk to all these people when my brain is so foggy that I barely know my own name.
For example, I went to a free clinic to apply on 5/2/07. My DOB is 4/20/57. I signed in and was supposed to put my DOB. I wrote 4/22/07 because DOB had registered with me as today's date. AS IF 4/22/07 WAS 5/2/07! When this happens, usually I know I've done something wrong, but I have to stare at it for long seconds before it registers. Finally, I realized I was supposed to put my DOB. I wrote 4/20/07, thinking I had corrected it. Duh, no. Not unless I was 12 days old. I was too embarassed to change it again.
Then to the paper work. First up, sign and date form. I wrote 4/22/07 AGAIN!!
These are not the actions of a coherent individual. But typical of me these days, increasingly more so. My family is becoming adept at translating me.
If I'm trying to mention an individual, say Tom Hopkins, I'll more often than not have to say "his name is something like Bob Haskitt" and they have to guess until they figure out who I'm talking about.
If I'm driving to K-Mart, I'll end up in the Target parking lot wondering why the hell I'm there. I'll pull into a fast food place and drive right by the speaker and directly up to the window.
All of which is scaring the hell out of me. I'm afraid that if I don't have masto, then I might have brain tumor. If a brain tumor might also cause chronic itching, rashes, diarrhea, stomach aches, gastritis, rhinitis, sinusitis, bone pain, body aches and major fatigue.
But, I have no insurance and no money. If I cannot get into the NIH soon, I'll have no choice but to have to go to the hospital emergency room as an indigent patient, I guess.
Please pray for me.
Saturday, April 28, 2007
Ruined
I received a wonderful birthday present on April 20th. A letter from The Hartford informing me that as of the 17th, my meager benefits were terminated. I no longer have any income whatsoever.
The decision was fraught with errors, from what my job title had been to my diagnosis. They had mastoiditis, which is an inner ear infection. My doctor assures me that she has it clearly stated in her notes that I have systemic mastocytosis and am permanently disabled from any type of work.
Knowing not what to do, I contacted an attorney. They got me in right away, and we will be appealing the decision (which could take about 3 months) which will, in all likelihood, be denied. Then they will file suit. Which could take a year to be settled. A year!
I was shocked to find out how heavily the so-called justice system in this country is weighed now in favor of the insurance companies. You would be, too.
Meantime, I am too sick to work almost every single day of my life, so I cannot apply for unemployment insurance. All I can do is apply for Social Security disability, which I should have long ago. I have just been so sick most of the time that I just couldn't deal with it, but I have had days when I could have so I have no excuse. However, The Hartford had been pushing me to use an attorney they referred me to and I just did not feel right about it. It seemed like the wrong thing to do. They are a firm located in the same state as the insurance company, not my state. I was relieved, at least, to hear from several firms I had contacted, including the one I finally settled on, that that would have been the totally wrong thing to do.
Now, I have to file directly with SS myself and it will probably be denied at which time my attorney will step in. They also want to talk to me about the allergic reactions I had to the medications which sent me on this path to illness. I have an appointment Monday with that set of attorneys.
I'm trying to find out about medicaid, welfare, food stamps, food banks, whatever.
I expect to lose my house. Or have to file bankruptcy. Or both.
I am distraught beyond words.
I will lose my internet connection when the bill next becomes due. Afterwards, I will post only when I can from my mothers or sisters computer, I suppose.
I have found the clinical trial being conducted at U of Michigan by Dr. Cem Akins which is still recruiting patients for diagnosis and testing for mastocytosis and have emailed requesting information. My TMS support group leader is also working to find out information for me in regard to testing.
Has any of my readers ever participated in such a program? Will they pay transportation costs? If so, perhaps I can get a definite diagnosis. If not, who knows?
If you don't hear from me again, ever or in a long time, I hope this blog has been helpful to you and that you have found some information that was useful.
The decision was fraught with errors, from what my job title had been to my diagnosis. They had mastoiditis, which is an inner ear infection. My doctor assures me that she has it clearly stated in her notes that I have systemic mastocytosis and am permanently disabled from any type of work.
Knowing not what to do, I contacted an attorney. They got me in right away, and we will be appealing the decision (which could take about 3 months) which will, in all likelihood, be denied. Then they will file suit. Which could take a year to be settled. A year!
I was shocked to find out how heavily the so-called justice system in this country is weighed now in favor of the insurance companies. You would be, too.
Meantime, I am too sick to work almost every single day of my life, so I cannot apply for unemployment insurance. All I can do is apply for Social Security disability, which I should have long ago. I have just been so sick most of the time that I just couldn't deal with it, but I have had days when I could have so I have no excuse. However, The Hartford had been pushing me to use an attorney they referred me to and I just did not feel right about it. It seemed like the wrong thing to do. They are a firm located in the same state as the insurance company, not my state. I was relieved, at least, to hear from several firms I had contacted, including the one I finally settled on, that that would have been the totally wrong thing to do.
Now, I have to file directly with SS myself and it will probably be denied at which time my attorney will step in. They also want to talk to me about the allergic reactions I had to the medications which sent me on this path to illness. I have an appointment Monday with that set of attorneys.
I'm trying to find out about medicaid, welfare, food stamps, food banks, whatever.
I expect to lose my house. Or have to file bankruptcy. Or both.
I am distraught beyond words.
I will lose my internet connection when the bill next becomes due. Afterwards, I will post only when I can from my mothers or sisters computer, I suppose.
I have found the clinical trial being conducted at U of Michigan by Dr. Cem Akins which is still recruiting patients for diagnosis and testing for mastocytosis and have emailed requesting information. My TMS support group leader is also working to find out information for me in regard to testing.
Has any of my readers ever participated in such a program? Will they pay transportation costs? If so, perhaps I can get a definite diagnosis. If not, who knows?
If you don't hear from me again, ever or in a long time, I hope this blog has been helpful to you and that you have found some information that was useful.
Wednesday, April 18, 2007
Tuesday, April 17, 2007
For now...
Ever since my accident, the treatment for which ended up causing my mastocytosis, I've had panic attacks. I had three, at least, the night of the accident, and I've had about a dozen since, in varying degrees.
About a dozen in almost two years does not qualify as often, so when they hit, I'm frightfully taken aback, which, I think, is an excellent way of putting it. I am hit with sudden, unaccountable fear of nothing in particular, everything in general. Sometimes it escalates from something relatively minor, with my response being outrageous.
I just had one so while the medication (Klonopin)takes effect, I thought I'd write a bit about it. Tonight, or rather this morning, since I've been so stuffed up I've stayed up all night trying to get clear enough to being able to consider actually breathing well enough to sleep, out it popped from nowhere. I finally went to bed and five minutes later was struck by panic that I had not paid my phone bill. Up I flew to dress, find my phone bill, reassure myself that I had not received a cut off notice, even to the extent of going out in the pre-dawn to search my car to be certain. My heart was racing, and I was gripped by unreasonable fear. So what? I would have just paid and it would be back on. But, no, I was panicked. Panicked not just because of my phone bill, but that disaster was about to befall me. Not the disaster of lack of phone, disaster!
This time I did not think, specifically, that I was about to die, as I do sometimes when I have one. But, still, it was lurking there somewhere in the dark recesses of the fruitcake of my mind. Tonight, it was just some vague feeling of utter, unavoidable disaster that would surely devastate me or devour me in some magical, inexplicable way.
I found my medication in a frenzy and took one immediately. A whole 1mg, not a half as when I am only feeling anxious, usually from the itching or the inability to do the things I want to be able to do. Then I checked my phone again to reassure myself (again) that it was still on, as though that would convince me that all was okay. Then, I was suddenly terribly afraid that the Klonopin would react with one of my other medicines, although I know for certain it would not, being prescribed all by my doctor and all being procured at the same pharmacist who would likely have pointed out any potential drug interactions and having read all of the accompanying literature of all the medicines. Still, I had to drag them all out and read them again to be sure, and would probably be reading them all once again had I not made myself sit down and start to write this post.
They are the most bizarre occurrences. My heart races, I begin flying or flittering about, my hands start to shake, my breathing becomes quick and shallow, I feel clammy all over, my thoughts race and I think unreasonable things when I know better.
I take the medicine, then proceed continuing the bizarreness for a while still yet, eventually I can sit down yet proceed to twist my hands and sometimes my whole body into knots for awhile while I worry, worry, worry, about something so ill defined in my head that I cannot really adequately explain it, even now and even here. Gradually, my heart calms and my breathing becomes deeper. My hands stay jittery for a while yet, as now, but will soon become less so. The clamminess will ease and I usually come to feel quite cold as I am becoming now. The tension in my back and legs begin to ease. I notice that I am no longer gripped in fear, it is just hovering, and will soon dissipate.
I will soon turn up the heat, crawl under the covers, my twisted body will ball up and I will sleep in peace for probably too long, and too late, but I will be peaceful.
Until next time.
When it will roar back for some unknown reason. Perhaps I know the reason for today. Perhaps it is the tragedy in Virginia that has brought this irrational fear and panic to me tonight. A reminder that sometimes fear does have a reason.
About a dozen in almost two years does not qualify as often, so when they hit, I'm frightfully taken aback, which, I think, is an excellent way of putting it. I am hit with sudden, unaccountable fear of nothing in particular, everything in general. Sometimes it escalates from something relatively minor, with my response being outrageous.
I just had one so while the medication (Klonopin)takes effect, I thought I'd write a bit about it. Tonight, or rather this morning, since I've been so stuffed up I've stayed up all night trying to get clear enough to being able to consider actually breathing well enough to sleep, out it popped from nowhere. I finally went to bed and five minutes later was struck by panic that I had not paid my phone bill. Up I flew to dress, find my phone bill, reassure myself that I had not received a cut off notice, even to the extent of going out in the pre-dawn to search my car to be certain. My heart was racing, and I was gripped by unreasonable fear. So what? I would have just paid and it would be back on. But, no, I was panicked. Panicked not just because of my phone bill, but that disaster was about to befall me. Not the disaster of lack of phone, disaster!
This time I did not think, specifically, that I was about to die, as I do sometimes when I have one. But, still, it was lurking there somewhere in the dark recesses of the fruitcake of my mind. Tonight, it was just some vague feeling of utter, unavoidable disaster that would surely devastate me or devour me in some magical, inexplicable way.
I found my medication in a frenzy and took one immediately. A whole 1mg, not a half as when I am only feeling anxious, usually from the itching or the inability to do the things I want to be able to do. Then I checked my phone again to reassure myself (again) that it was still on, as though that would convince me that all was okay. Then, I was suddenly terribly afraid that the Klonopin would react with one of my other medicines, although I know for certain it would not, being prescribed all by my doctor and all being procured at the same pharmacist who would likely have pointed out any potential drug interactions and having read all of the accompanying literature of all the medicines. Still, I had to drag them all out and read them again to be sure, and would probably be reading them all once again had I not made myself sit down and start to write this post.
They are the most bizarre occurrences. My heart races, I begin flying or flittering about, my hands start to shake, my breathing becomes quick and shallow, I feel clammy all over, my thoughts race and I think unreasonable things when I know better.
I take the medicine, then proceed continuing the bizarreness for a while still yet, eventually I can sit down yet proceed to twist my hands and sometimes my whole body into knots for awhile while I worry, worry, worry, about something so ill defined in my head that I cannot really adequately explain it, even now and even here. Gradually, my heart calms and my breathing becomes deeper. My hands stay jittery for a while yet, as now, but will soon become less so. The clamminess will ease and I usually come to feel quite cold as I am becoming now. The tension in my back and legs begin to ease. I notice that I am no longer gripped in fear, it is just hovering, and will soon dissipate.
I will soon turn up the heat, crawl under the covers, my twisted body will ball up and I will sleep in peace for probably too long, and too late, but I will be peaceful.
Until next time.
When it will roar back for some unknown reason. Perhaps I know the reason for today. Perhaps it is the tragedy in Virginia that has brought this irrational fear and panic to me tonight. A reminder that sometimes fear does have a reason.
Friday, April 13, 2007
Baaaaack!
Sorry for the neglect to this blog lately.
Here is something I think is very interesting. For about 2 weeks after I finished the Z-pak of antibiotics, my mental dysfunction cleared considerably. Does anyone know why or why it would? I have no idea. I don't even know if it was connected, but it was definite and very noticeable.
During those two weeks or so, I also had almost no days of myalgia and the fatigue disappeared.
I don't guess it's possible to remain on anti-biotics all of the time, is it? I'll have to remember to tell my doctor and see if she understands why.
After 2 weeks, it began to decline again. About the same time, everything bloomed and my allergies went nuts and all of my symptoms began to come back or get worse with a vengence. Rashes flared up badly instead of remaining just visible and mildly aggravating went to wild, red whelping and insanity inspiring, stomach and digestive symptoms worsened, increasing exponentially it seems. Today has been very bad. I'm about ready to go with the astronaut diapers or something.
My neighbor from across the street was sweet enough to mow my grass for me one week ago today. I had the fan on the heat pump running at the time, but all the windows and doors closed. There were tons of garlic patches in the grass this year since I wasn't able to do much in the way of gardening or maintenance last year and I could really smell it in the house but I'm so duh all the time I didn't think, hey, maybe I should turn off the house fan. I got a little cough-y and a little extra congested but I was okay until he knocked on the door and I opened it. Within 2 seconds, my head filled with mucus, my throat closed up, and fluid started flooding in to my lungs. Bless his heart, I think I scared him. I had to grab a facemask, jump in my car and get the hell out of there and to my mom's house who lives only a few minutes away. Where I proceeded to scare the hell out of her while I wheezed and hacked and tried to get the mucus to stop flooding down my throat and get enough air in me to avoid turning blue. Benadryl and Nasalcrom (which is just sodium cromolyn) finally got me under control, but, as always, its extremely scary when I have a major, massive allergic reaction like that.
In the last couple of days, all the rashes flared up at the same time, I used the corticosteroid ointment in more places than I should at any one time and that always makes me feel especially punkish for a day or two.
The fatigue has not been especially bad lately, though. I do get tired more and faster than everyone else, but I get tired after actually doing things, not just for breathing. Don't get too excited. I don't mean I get tired after doing things like a normal person does things. I mean, I go to the grocery store and collapse in exhaustion. I sort the laundry and have to lay down for an hour. But, at least I don't wake up too tired to move.
My little dog is better and I'm counting my blessings that his illness was during this little space of time when I felt pretty decent or I never could have dealt with it.
I can't believe that I'll be 50 next Friday, April 20th. It's really hard to fathom. But, I'm glad. It's much better than the alternative, as they say!
Here is something I think is very interesting. For about 2 weeks after I finished the Z-pak of antibiotics, my mental dysfunction cleared considerably. Does anyone know why or why it would? I have no idea. I don't even know if it was connected, but it was definite and very noticeable.
During those two weeks or so, I also had almost no days of myalgia and the fatigue disappeared.
I don't guess it's possible to remain on anti-biotics all of the time, is it? I'll have to remember to tell my doctor and see if she understands why.
After 2 weeks, it began to decline again. About the same time, everything bloomed and my allergies went nuts and all of my symptoms began to come back or get worse with a vengence. Rashes flared up badly instead of remaining just visible and mildly aggravating went to wild, red whelping and insanity inspiring, stomach and digestive symptoms worsened, increasing exponentially it seems. Today has been very bad. I'm about ready to go with the astronaut diapers or something.
My neighbor from across the street was sweet enough to mow my grass for me one week ago today. I had the fan on the heat pump running at the time, but all the windows and doors closed. There were tons of garlic patches in the grass this year since I wasn't able to do much in the way of gardening or maintenance last year and I could really smell it in the house but I'm so duh all the time I didn't think, hey, maybe I should turn off the house fan. I got a little cough-y and a little extra congested but I was okay until he knocked on the door and I opened it. Within 2 seconds, my head filled with mucus, my throat closed up, and fluid started flooding in to my lungs. Bless his heart, I think I scared him. I had to grab a facemask, jump in my car and get the hell out of there and to my mom's house who lives only a few minutes away. Where I proceeded to scare the hell out of her while I wheezed and hacked and tried to get the mucus to stop flooding down my throat and get enough air in me to avoid turning blue. Benadryl and Nasalcrom (which is just sodium cromolyn) finally got me under control, but, as always, its extremely scary when I have a major, massive allergic reaction like that.
In the last couple of days, all the rashes flared up at the same time, I used the corticosteroid ointment in more places than I should at any one time and that always makes me feel especially punkish for a day or two.
The fatigue has not been especially bad lately, though. I do get tired more and faster than everyone else, but I get tired after actually doing things, not just for breathing. Don't get too excited. I don't mean I get tired after doing things like a normal person does things. I mean, I go to the grocery store and collapse in exhaustion. I sort the laundry and have to lay down for an hour. But, at least I don't wake up too tired to move.
My little dog is better and I'm counting my blessings that his illness was during this little space of time when I felt pretty decent or I never could have dealt with it.
I can't believe that I'll be 50 next Friday, April 20th. It's really hard to fathom. But, I'm glad. It's much better than the alternative, as they say!
Tuesday, April 03, 2007
Not really, and yet...
Summer makes me drowsy.
Autumn makes me sing.
Winter's pretty lousy,
But I hate Spring
- Dorothy Parker
Actually, I've always loved Spring. It is the season of my birth, and every year since it has seemed like the season of my own rebirth. Until, that is, I developed a disease where my immune system is on overdrive all of the time. And until Spring no longer springs but pounces like a lion with everything, and I do mean everything, blooming all at once!
I've never seen a Spring like this that I can recall. A few daffodils peeked out and seemingly the very next day, every tree, bush, bulb, and flower burst forth like a beautiful, yet deadly (to me) volcano of color and pollen.
We've had three 80 degree days already with another on the slate for tomorrow. Yet, it's likely to be freezing on Easter Sunday a few days from now.
Nothings happening to the climate, my ass. Way to go, (surprisingly) Supreme Court.
Meantime, as you can probably tell by both the quantity and quality of my posts, I'm living on double doses of Clariten and constant doses of Benadryl on top of everything I have to take already.
(crosspost)
Wednesday, March 21, 2007
Risky
I don't have much time for blogging right now because I'm tending to my little 16 year old shih-tzu, Risky. He has had bad arthritis in his back legs for a few years now, in addition to the after effects of canine vestibular syndrome for three years now, displays some symptoms of cognitive dysfunction syndrome and has gone blind in one eye with cataract in the other. In other words, he's very old.
He has to be sedated to be groomed. Only 1/4 of a tranquilizer, barely a speck. But, he has always been a snapper and now he'll snap if bothered at all, even though he's on more medication than I allow myself to spend on myself. Not that he has any teeth, unless he catches you with the stumps of his jaw teeth, and then its just the pressure of his jaws that hurt. Still, since he is a shih-tzu, he must be groomed or his face becomes like a sheepdog, which can't happen as it irritates his eyes. So, to be groomed, even by my sweet and gentle groomer, he has to be tranked a bit.
Afterwards, he sleeps, and sleeps. Usually for 24 hours. Last time, he had trouble getting back to walking for about 3 days. This time, its Wednesday, he was groomed on Thursday, and he still will not use one of his back legs. I took him to the vet on Tuesday for an injection and a new medicene. I'm having to work with him to get him to use his leg, helping him walk, taking him to his paper when he has to go or everytime I think he might and holding him up, massaging it, putting heat packs on it, etc.
He goes nuts barking and whining if I'm away from him more than a few feet for more than a few minutes and if I turn my attention away to anything other than him. Like if I pick up my laptop. The only reason I'm able to write now is because he's sound asleep at my feet after taking his new medicene.
So... blogging vs. devoted companion of 16 years who needs me. Hmm. That's the definition of a no brainer. I'll be back as I can when I can.
I mean, look at that face!
Saturday, March 10, 2007
Never lose hope!
I'm doing fine right now. Trying to get some things done while I can. Finished the anti-biotics and they really helped a bunch.
Friday, March 09, 2007
Wednesday, March 07, 2007
Pain, pain go away
The myalgia was so bad that the Darvocet only eased it some so I had to stay still or feel the pain. I finally fell asleep around daybreak, only to awaken with excruciating bone pain at 9:45am. It was agony.
I had to take another Darvocet and slept all day. Got up about 4:30pm as my family had been calling all day and their calls finally woke me up. By 7:30pm, I had to go to bed again and slept until 11:30pm.
Still in pain, it seemed to be mostly myalgia but now seems to be turning directly into bone pain, so I just took my last Darvocet. I'm really hoping to feel better in the morning.
I had to take another Darvocet and slept all day. Got up about 4:30pm as my family had been calling all day and their calls finally woke me up. By 7:30pm, I had to go to bed again and slept until 11:30pm.
Still in pain, it seemed to be mostly myalgia but now seems to be turning directly into bone pain, so I just took my last Darvocet. I'm really hoping to feel better in the morning.
Monday, March 05, 2007
Miserable ass
So, Wednesday was a fairly good day, though I still didn't feel like doing much of anything. Started on the Clariten that night and doxepin on Thursday and I was sleepy all day. Then on Friday, I became possessed by Satan.
Geezuslouisis was I ill-tempered! Seriously, I was possessed by Satan. Mean. Rotten. Hateful! I probably could have chewed puppies and kittens.
I thought it might be the doxepin but might wear off after a couple of days once I adjusted. Its only 10mg. So I laid off of the clariten instead and Satan was exorcised by Saturday. Perhaps it was the combination. I've decided to keep up with the doxepin for few more days and then try the clariten again. I can't tell that it's helping the rashes though because they have been flaring up again.
I didn't become congested anymore than usual without the clariten. But, I slept very fitfully Friday night and woke up feeling badly. I had to cancel the dogs appointment as I didn't even feel up to taking them to the groomers. Sunday I felt worse and decided that I needed to finally admit that I apparently have some kind of sinus infection that I've been suspecting for weeks. I've been running a low grade fever and just haven't felt good even on days when I haven't had any significant symptoms for weeks and weeks. I've had bad, ucky yook coming out of my left sinuses (which has a deviated septum) and headaches on that side and ear aches and periods of almost deafness on that side. But, at times it would seem better. I had meant to mention it to the doctor when I 'd seen her but my mind is so bad I had forgotten. I hadn't written it down like I had everything else (otherwise I wouldn't have been able to tell her anything).
I called today and got a Z-Pak and took the first dose this evening. Now I have terrible myalgia but I don't know if its connected. It started immediately after taking the dose. I mean immediately. Within minutes. That doesn't seem reasonable, but nothing about this disease seems reasonable, so who knows?
Anyway, the myalgia is so bad I just took a darvocet, so I'll feel better soon I hope.
I have some letters from a reader I want to post, but maybe I'll feel up to fooling with it in a day or two.
Oh, one more note. Very, very early Sunday morning I had another panic attack. I've only had about 5, all since after the night of my accident. I'd had 3 that night while in the emergency room, beginning when they had me in that big head contraption to keep me from moving. I started to feel like I was suffocating even though I could breathe. And that is how they have been everytime since. I had slept a few hours, awakenend, and after a few more hours I felt like I could sleep again. So I went back to bed and I was breathing find, I wasn't stopped up or anything, but all of a sudden I became convinced I was suffocating, although my rational mind kept telling myself that I could breathe, I was breathing, but it didn't matter. I was suffocating. I got up and took a Klonopin which the doc has given me for them (and also for restless legs which I occasionally have). Then I went outside on the porch and tried to breathe deeply and calm myself down. It was cold as hell and I was barefooted but I didn't care, I just had to get out in the night air so I could breathe, even though I could breathe anyway. It's the weirdest thing. Almost impossible to explain to anyone who has never had one, which I had never had prior to the accident. Very strange.
Ooops. Just had a little tachycardia. I've been having little bouts of that for weeks and weeks now, after none for quite a while. Thank God they pass quickly.
I feel bad sometimes for just writing about my miseries. But, that is why I started this blog, as a kind of diary, not so much for readers, but more to keep my miseries out of my other blog where I have a little fun and rant about stuff. Still, though I'm very happy you're here. And you are the reason I try to keep up the links... for your research and edification, not so much my moaning and groanings.
Geezuslouisis was I ill-tempered! Seriously, I was possessed by Satan. Mean. Rotten. Hateful! I probably could have chewed puppies and kittens.
I thought it might be the doxepin but might wear off after a couple of days once I adjusted. Its only 10mg. So I laid off of the clariten instead and Satan was exorcised by Saturday. Perhaps it was the combination. I've decided to keep up with the doxepin for few more days and then try the clariten again. I can't tell that it's helping the rashes though because they have been flaring up again.
I didn't become congested anymore than usual without the clariten. But, I slept very fitfully Friday night and woke up feeling badly. I had to cancel the dogs appointment as I didn't even feel up to taking them to the groomers. Sunday I felt worse and decided that I needed to finally admit that I apparently have some kind of sinus infection that I've been suspecting for weeks. I've been running a low grade fever and just haven't felt good even on days when I haven't had any significant symptoms for weeks and weeks. I've had bad, ucky yook coming out of my left sinuses (which has a deviated septum) and headaches on that side and ear aches and periods of almost deafness on that side. But, at times it would seem better. I had meant to mention it to the doctor when I 'd seen her but my mind is so bad I had forgotten. I hadn't written it down like I had everything else (otherwise I wouldn't have been able to tell her anything).
I called today and got a Z-Pak and took the first dose this evening. Now I have terrible myalgia but I don't know if its connected. It started immediately after taking the dose. I mean immediately. Within minutes. That doesn't seem reasonable, but nothing about this disease seems reasonable, so who knows?
Anyway, the myalgia is so bad I just took a darvocet, so I'll feel better soon I hope.
I have some letters from a reader I want to post, but maybe I'll feel up to fooling with it in a day or two.
Oh, one more note. Very, very early Sunday morning I had another panic attack. I've only had about 5, all since after the night of my accident. I'd had 3 that night while in the emergency room, beginning when they had me in that big head contraption to keep me from moving. I started to feel like I was suffocating even though I could breathe. And that is how they have been everytime since. I had slept a few hours, awakenend, and after a few more hours I felt like I could sleep again. So I went back to bed and I was breathing find, I wasn't stopped up or anything, but all of a sudden I became convinced I was suffocating, although my rational mind kept telling myself that I could breathe, I was breathing, but it didn't matter. I was suffocating. I got up and took a Klonopin which the doc has given me for them (and also for restless legs which I occasionally have). Then I went outside on the porch and tried to breathe deeply and calm myself down. It was cold as hell and I was barefooted but I didn't care, I just had to get out in the night air so I could breathe, even though I could breathe anyway. It's the weirdest thing. Almost impossible to explain to anyone who has never had one, which I had never had prior to the accident. Very strange.
Ooops. Just had a little tachycardia. I've been having little bouts of that for weeks and weeks now, after none for quite a while. Thank God they pass quickly.
I feel bad sometimes for just writing about my miseries. But, that is why I started this blog, as a kind of diary, not so much for readers, but more to keep my miseries out of my other blog where I have a little fun and rant about stuff. Still, though I'm very happy you're here. And you are the reason I try to keep up the links... for your research and edification, not so much my moaning and groanings.
Wednesday, February 28, 2007
Sunshine and Starbucks
Whoohoo! Woke up this morning at 9a.m! I was still very achy so I stayed in until around 10a.m. but it was so good to wake up in the morning for once.
I'd had to take another painkiller at bedtime and once more during the middle of the night, but managed to get enough sleep in the hours of darkness. Thankfully!
Ran out and got a biscuit and a grande mocha frappichinno as a special treat. It was a beautiful, warm day and I just stood outside and soaked up the sunshine for a little bit. It felt good. The pain had eased off by around 11a.m. and I managed to get a little bit done around the house. Very little, but still a little bit. With a lot of breaks.
By 2:30p.m. I was exhausted, of course, and very, very sleepy despite the massive jolt of caffeine from Starbucks. So, I napped from 2:30p.m. until 4:30p.m. and woke up feeling good.
Yeaaaaa!
I called the dog groomer to set appointments for my shih-tzu and Australian Shepard and got her recording. There was a locked door in my brain though, and I could not think of my phone number for the life of me. Now, this happens to everyone occasionally and has certainly happened to me zillions of times in the past but you always remember it within a few minutes, right? Lordy! Not me. Not with this brain fog. All I could remember were the first three digits. Finally, I started calling all of my relatives to ask them!! I couldn't get them and called the groomer again and this time, thank goodness, she answered.
I still don't know my phone number. I'll have to ask someone. Now, that, ladies and gentlemen, is brain fog.
I'd had to take another painkiller at bedtime and once more during the middle of the night, but managed to get enough sleep in the hours of darkness. Thankfully!
Ran out and got a biscuit and a grande mocha frappichinno as a special treat. It was a beautiful, warm day and I just stood outside and soaked up the sunshine for a little bit. It felt good. The pain had eased off by around 11a.m. and I managed to get a little bit done around the house. Very little, but still a little bit. With a lot of breaks.
By 2:30p.m. I was exhausted, of course, and very, very sleepy despite the massive jolt of caffeine from Starbucks. So, I napped from 2:30p.m. until 4:30p.m. and woke up feeling good.
Yeaaaaa!
I called the dog groomer to set appointments for my shih-tzu and Australian Shepard and got her recording. There was a locked door in my brain though, and I could not think of my phone number for the life of me. Now, this happens to everyone occasionally and has certainly happened to me zillions of times in the past but you always remember it within a few minutes, right? Lordy! Not me. Not with this brain fog. All I could remember were the first three digits. Finally, I started calling all of my relatives to ask them!! I couldn't get them and called the groomer again and this time, thank goodness, she answered.
I still don't know my phone number. I'll have to ask someone. Now, that, ladies and gentlemen, is brain fog.
Tuesday, February 27, 2007
Another bizarro day in the life
Except for the general fatigue and malaise, I've been feeling pretty good the last week or so.
My sis and my niece dragged me out into the world Friday and Saturday and it was so wonderful getting out to a real restaurant and the mall and being around my two beautiful nephews. We had a great time and except for the usual rhinitis, I didn't have any problems at all.
I had run out of ranitidine by Saturday night, so I missed two doses, then forgot to take either the ranitidine or the Prilosec Monday morning. So, of course, by last night my tummy was torn up and three new fever blisters popped up.
Oh. The fever blisters are new to the tummy upsets connected with the disease. In the past, I've gotten them anytime my stomach was upset because of the flu or whatever, but I hadn't had one for a year despite all the tummy upsets since. Then, when I went through the bad spell recently, I had five! It sucks. Of course, it could have been a virus.
It's pretty bad when you're so sick so often that you can't even notice when you catch a virus!
Anyway, I was feeling much better this afternoon. I took my mom to shop at Target and while there I got my $4.00 prescriptions filled. While I'm grateful for Wal-mart for starting the $4.00 prescription program, I still have a lot of problems with them, so I choose to go to Target who matches the program.
And, boy, am I glad. The professionalism and service at Target was superb, while all my experiences with the Wal-mart pharmacy have been nightmares. So, I got my prescription strength ranitidine, loratidine (Claritin), and doxepin. I haven't ever taken doxepin yet, and will start in the morning. Also had the Klonopin filled, which should help me get my circadian rhythmn back. Klonopin is great when you are anxious and really makes you go to sleep. When I get the least bit anxious, my symptoms go haywire. Not being able to sleep at night when I want causes anxiety. I've been taking Serex (oxazepam) which is what I keep on hand when I need an anti-anxiety med and still need to function. It doesn't make me sleepy, it just makes me calm and eases my mind. Unless I'm really upset, then it really calms me down. It adjusts itself somehow to the level of anxiety being experienced. It will let me go to sleep even if really anxious if I lay down then, and I always wake up without a "trank" hangover.
Anyway, then we went to a little diner which has really excellent southern cooking. I had country fried steak with gravy, potato's and onions, steamed cabbage, and fried green beans. It was soooo good. But, I guess there was a trigger in there somewhere.
Ten minutes after finishing, the bone pain started. For some reason, it always starts in my right arm, moves across the back, then starts down to my hips and legs. Then my stomach started rumbling with the first signs of diarhea. My mom gave me a Tramadol which she had and made me take it before it got too bad.
That was a good thing. By the time I got home, I still had to go to bed for a couple of hours and I still hurt some, but it was nothing like the last time about a week or 10 days ago when I waited until it was bad before I took a Darvocet. Both times, the bone pain had occurred on days when I had taken a Cymbalta (yes, I dole them out to myself every few days or so), so Cymbalta does help the myalgia but has no effect on the bone pain when it hits.
The bone pain is crushing.
Anyway, now, about 5 hours later, there is a general ache in the bones when I move, getting a little worse so I'll probably have to take another painkiller before bed, the diarrhea has passed for the most part and I'm left with only a bad queesiness.
Still, I am getting out in the morning and going to the library. My family is helping me get out and about more, and that helps. It really does.
It also really helps when I hear from my readers. Thank you all. It inspires me and keeps me going to know that I am helping others by sharing my days and helps them to not feel so alone. Yes, there are others like you and like me suffering from this strange, bizarro illness. It's something that is so very hard to understand unless you actually experience it, and it takes time and patience for loved ones to understand sometimes, not to mention the medical community. But, we can understand one another and we can all help one another through another day, every day.
So, please, let me hear from you. Post your comments or email me at livingwithmasto@aol.com.
My sis and my niece dragged me out into the world Friday and Saturday and it was so wonderful getting out to a real restaurant and the mall and being around my two beautiful nephews. We had a great time and except for the usual rhinitis, I didn't have any problems at all.
I had run out of ranitidine by Saturday night, so I missed two doses, then forgot to take either the ranitidine or the Prilosec Monday morning. So, of course, by last night my tummy was torn up and three new fever blisters popped up.
Oh. The fever blisters are new to the tummy upsets connected with the disease. In the past, I've gotten them anytime my stomach was upset because of the flu or whatever, but I hadn't had one for a year despite all the tummy upsets since. Then, when I went through the bad spell recently, I had five! It sucks. Of course, it could have been a virus.
It's pretty bad when you're so sick so often that you can't even notice when you catch a virus!
Anyway, I was feeling much better this afternoon. I took my mom to shop at Target and while there I got my $4.00 prescriptions filled. While I'm grateful for Wal-mart for starting the $4.00 prescription program, I still have a lot of problems with them, so I choose to go to Target who matches the program.
And, boy, am I glad. The professionalism and service at Target was superb, while all my experiences with the Wal-mart pharmacy have been nightmares. So, I got my prescription strength ranitidine, loratidine (Claritin), and doxepin. I haven't ever taken doxepin yet, and will start in the morning. Also had the Klonopin filled, which should help me get my circadian rhythmn back. Klonopin is great when you are anxious and really makes you go to sleep. When I get the least bit anxious, my symptoms go haywire. Not being able to sleep at night when I want causes anxiety. I've been taking Serex (oxazepam) which is what I keep on hand when I need an anti-anxiety med and still need to function. It doesn't make me sleepy, it just makes me calm and eases my mind. Unless I'm really upset, then it really calms me down. It adjusts itself somehow to the level of anxiety being experienced. It will let me go to sleep even if really anxious if I lay down then, and I always wake up without a "trank" hangover.
Anyway, then we went to a little diner which has really excellent southern cooking. I had country fried steak with gravy, potato's and onions, steamed cabbage, and fried green beans. It was soooo good. But, I guess there was a trigger in there somewhere.
Ten minutes after finishing, the bone pain started. For some reason, it always starts in my right arm, moves across the back, then starts down to my hips and legs. Then my stomach started rumbling with the first signs of diarhea. My mom gave me a Tramadol which she had and made me take it before it got too bad.
That was a good thing. By the time I got home, I still had to go to bed for a couple of hours and I still hurt some, but it was nothing like the last time about a week or 10 days ago when I waited until it was bad before I took a Darvocet. Both times, the bone pain had occurred on days when I had taken a Cymbalta (yes, I dole them out to myself every few days or so), so Cymbalta does help the myalgia but has no effect on the bone pain when it hits.
The bone pain is crushing.
Anyway, now, about 5 hours later, there is a general ache in the bones when I move, getting a little worse so I'll probably have to take another painkiller before bed, the diarrhea has passed for the most part and I'm left with only a bad queesiness.
Still, I am getting out in the morning and going to the library. My family is helping me get out and about more, and that helps. It really does.
It also really helps when I hear from my readers. Thank you all. It inspires me and keeps me going to know that I am helping others by sharing my days and helps them to not feel so alone. Yes, there are others like you and like me suffering from this strange, bizarro illness. It's something that is so very hard to understand unless you actually experience it, and it takes time and patience for loved ones to understand sometimes, not to mention the medical community. But, we can understand one another and we can all help one another through another day, every day.
So, please, let me hear from you. Post your comments or email me at livingwithmasto@aol.com.
Wow!
Wowzers, we are getting about 70 hits a day here now. Hope folks are finding the linkages helpful.
Please feel free to leave comments. I'd really like to hear from you.
Please feel free to leave comments. I'd really like to hear from you.
Saturday, February 24, 2007
Whining again
Well, I wasn't posting because I was sick until I wasn't posting because I was feeling pretty good.
Unfortunately, one lingering side effect from going through a long phase of being sick to the point of taking to my bed at all hours around the clock is that my circadian rhythmn gets all screwed up for weeks on end afterward. I just haven't been sleeping at night, for the most part. Even when I take something, I cannot seem to get sleepy until the sun rises.
So, I end up sleeping most of the day, getting up in the late afternoon and by the time I'm well awake, the sun is setting. I simply cannot make myself do my household chores at night. I try, but end up doing little more than piddling around. Coming after a long spell of simply not being well enough to accomplish much, I end up with a very messy house, a ton of laundry, and badly in need of a dusting and vacuuming. The dust is a problem and starts to make me feel badly again, and I know that as soon as I do get the dusting and vacuuming done, it will stir up so badly that I'll end up being very sick again for at least 3 or 5 days, even though I take precautions like wearing a face mask and showering immediately afterwards.
It's a vicious cycle and it sucks. No one in my family is in a position where I would even consider asking for help. My mom is 82. My sis works full time and has a heart patient husband. My niece has two little boys, one 2 and one 4, and a career. It would be so much better if I did not live alone. I wish I'd managed to find a good man when I was in good shape as I can't imagine a guy wanting to take on such a pile of a ragheap at this point. Too bad that I'm neither of the inclination nor would it be legal to marry an actual maid!
Unfortunately, one lingering side effect from going through a long phase of being sick to the point of taking to my bed at all hours around the clock is that my circadian rhythmn gets all screwed up for weeks on end afterward. I just haven't been sleeping at night, for the most part. Even when I take something, I cannot seem to get sleepy until the sun rises.
So, I end up sleeping most of the day, getting up in the late afternoon and by the time I'm well awake, the sun is setting. I simply cannot make myself do my household chores at night. I try, but end up doing little more than piddling around. Coming after a long spell of simply not being well enough to accomplish much, I end up with a very messy house, a ton of laundry, and badly in need of a dusting and vacuuming. The dust is a problem and starts to make me feel badly again, and I know that as soon as I do get the dusting and vacuuming done, it will stir up so badly that I'll end up being very sick again for at least 3 or 5 days, even though I take precautions like wearing a face mask and showering immediately afterwards.
It's a vicious cycle and it sucks. No one in my family is in a position where I would even consider asking for help. My mom is 82. My sis works full time and has a heart patient husband. My niece has two little boys, one 2 and one 4, and a career. It would be so much better if I did not live alone. I wish I'd managed to find a good man when I was in good shape as I can't imagine a guy wanting to take on such a pile of a ragheap at this point. Too bad that I'm neither of the inclination nor would it be legal to marry an actual maid!
Thursday, February 15, 2007
Perking up
I'm coming out of a bad spell with my tummy and massive fatigue. Feeling better today and will try to pick up with some posts in the next while.
I want to add a list of medications commonly prescribed, as I see that a lot of people find the site on just such a search. Of course, only your doctor can know what will be best for you, and it will be with this caution that I'll list H1 blockers, H2 blockers, etc. I advise all to look to the very bottom of this blog for the info sheet from The Mastocytosis Society.
The Mastocytosis Society has accepted me as a member under their Angel program, for which I am very grateful. They seem to be a great group of people and I encourage everyone visiting this blog to go there first in their search for info.
I want to add a list of medications commonly prescribed, as I see that a lot of people find the site on just such a search. Of course, only your doctor can know what will be best for you, and it will be with this caution that I'll list H1 blockers, H2 blockers, etc. I advise all to look to the very bottom of this blog for the info sheet from The Mastocytosis Society.
The Mastocytosis Society has accepted me as a member under their Angel program, for which I am very grateful. They seem to be a great group of people and I encourage everyone visiting this blog to go there first in their search for info.
Monday, February 12, 2007
Wednesday, February 07, 2007
Itchy witchy
Aaaarrrggghh! It's the middle of the night and I'm up again, this time because of the itching. There's always one symptom or the other that's giving me hell. Who knows why? It could be the stress of seeing the doctor, though it wouldn't be stressful for any normal person. She is a very lovely and caring doctor. I didn't feel stressed but that doesn't mean anything to my body.
Afterwards, I accompanied my 82 year old mom to her doctor and basically napped in the waiting room. I get so tired from nothing. Still, it was good to get out of the house. I simply have to and jump at the chance to go anywhere, although I invariably end up sick in some way from it. Not that I'm a gadabout. I don't dare go to the mall or anywhere I might encounter heavy doses of perfumes or dyes. About once or twice a month, I get out to a family dinner out, accompany someone on an errand. See a movie once in a blue moon. That's about it. I don't care. I'll go insane if I don't get out. Then we grabbed a bit to eat. I had fish. Perhaps I will have to eliminate all fish/seafood/shellfish. I dunno.
All I know is I've broken out in several new rashes. Just gave in and took an Atarax. From all the prescriptions I have, you'd think I take a pill every hour on the hour, but I very rarely take anything but ranitidine and Prilosec, and an anti-depressant. I'm very averse to taking medication, especially since it is what got me in this situation to start with. I go for spells without taking an H1 blocker and only do so when I must. I did get RX's for all that I should be taking, and some are the Wal-mart $4 prescriptions so I have no excuse for not getting and taking them. And I have renewed my intention of pursuing the PPA program Rx's. I don't know why I am having such a problem taking care of that. I think it seems like charity to me and I have always hated to ask for anything from anyone, but I've really got to get over that. And I will. I will. I swear.
Oh. One more thing. I've noticed recently that the ends of my nails are turning downward, drastically. This is weird. My nails have never done this before. I asked the doc if it meant anything and she couldn't think of anything. So, I looked it up on the internets. Supposedly it MAY denote heart, liver or respiratory problems. My heart was thoroughly checked out a year ago. I have asthma that kicks up periodically but that has never made my nails do this. That leaves liver. Maybe masto is impairing my liver functions. I don't know. I don't want to think about it. My best solution: Cut the damn nails off to the quick and toss 'em into the river of denial. Don't really have much of a choice otherwise.
Afterwards, I accompanied my 82 year old mom to her doctor and basically napped in the waiting room. I get so tired from nothing. Still, it was good to get out of the house. I simply have to and jump at the chance to go anywhere, although I invariably end up sick in some way from it. Not that I'm a gadabout. I don't dare go to the mall or anywhere I might encounter heavy doses of perfumes or dyes. About once or twice a month, I get out to a family dinner out, accompany someone on an errand. See a movie once in a blue moon. That's about it. I don't care. I'll go insane if I don't get out. Then we grabbed a bit to eat. I had fish. Perhaps I will have to eliminate all fish/seafood/shellfish. I dunno.
All I know is I've broken out in several new rashes. Just gave in and took an Atarax. From all the prescriptions I have, you'd think I take a pill every hour on the hour, but I very rarely take anything but ranitidine and Prilosec, and an anti-depressant. I'm very averse to taking medication, especially since it is what got me in this situation to start with. I go for spells without taking an H1 blocker and only do so when I must. I did get RX's for all that I should be taking, and some are the Wal-mart $4 prescriptions so I have no excuse for not getting and taking them. And I have renewed my intention of pursuing the PPA program Rx's. I don't know why I am having such a problem taking care of that. I think it seems like charity to me and I have always hated to ask for anything from anyone, but I've really got to get over that. And I will. I will. I swear.
Oh. One more thing. I've noticed recently that the ends of my nails are turning downward, drastically. This is weird. My nails have never done this before. I asked the doc if it meant anything and she couldn't think of anything. So, I looked it up on the internets. Supposedly it MAY denote heart, liver or respiratory problems. My heart was thoroughly checked out a year ago. I have asthma that kicks up periodically but that has never made my nails do this. That leaves liver. Maybe masto is impairing my liver functions. I don't know. I don't want to think about it. My best solution: Cut the damn nails off to the quick and toss 'em into the river of denial. Don't really have much of a choice otherwise.
Sunday, February 04, 2007
Atlas Lifted
Taking Cymbalta for a week now has really helped me get my head screwed back on better, and it has lifted the immeasurable heaviness that seems to sit on my shoulders when depression grips me. The fatigue is still around, but it is easier to bear without the weight of the world on my shoulders. I've gone from sleeping with a few hours of wakefulness to being wakeful with a need for two two hour naps a day, which might sound like a lot, but is a vast improvement. Most days I have awakened fairly early in the morning, and when I've awakened, I've been awake rather than in a stupor.
I did have quesiness and some stomach upset the first few days, but I was having it before being in the midst of a spell of gastronintestinal symptoms so I cannot say for sure that it contributed to it. It has faded now and I've only been having the regular stomachaches.
The myalgia is much better, but I have no idea if the Cymbalta has anything to do with it. It comes in spells and can last for weeks, then passes for the most part. I'd have to be on Cymbalta for several months before I'd really know. I have still had the pain, but mostly only when I've been out and about, going to the grocery store, running errands or visiting relatives. The ads for it on TV do say it's supposed to help pain associated with depression.
It's a serotonin and norepinephrine reuptake inhibitor. The Wellbutrin I've taken for years is a dopamine and norepinephrine reuptake inhibitor. I had the bone pain while on Wellbutrin, but not as badly as recently while I've been off and since it's been better with the Cymbalta, perhaps the norepinephrine may help.
My brain fog is a little better also. The brick wall in my head seems a little more mud brick rather than concrete block. I actually enjoyed watching Jeopardy tonight for the first time since I can remember. I used to love to watch it, trying to beat the contestants and doing quite well, but since I've been sick it's been an exercise in frustration. I might as well have been beating my head against the wall. I know I know the answers but couldn't answer for the life of me. Tonight, I actually came up with a few answers while the show was still on. Triumph!
I've also found this link to be very helpful. I did not know that fibromyalgia also caused brain fog. The rhematologist said that I had strong indications of fibromyalgia but that it might be the symptoms of mastocytosis also. I know that I had severe pain in probably 85% of the places she touched. I was very surprised to feel pain in most of those places, since I had simply felt pain seemingly everywhere. In reading the personal stories of a few masto patients, I've seen that several had also been diagnosed with fibromyalgia. There must be a connection.
If I get a chance, I'll ask the doc on Tuesday, though she probably won't know. I had to reschedule from Thursday due to the snow storm we had.
UPDATE: Cymbalta is commonly prescribed for fibromyalgia with depression. See here.
I did have quesiness and some stomach upset the first few days, but I was having it before being in the midst of a spell of gastronintestinal symptoms so I cannot say for sure that it contributed to it. It has faded now and I've only been having the regular stomachaches.
The myalgia is much better, but I have no idea if the Cymbalta has anything to do with it. It comes in spells and can last for weeks, then passes for the most part. I'd have to be on Cymbalta for several months before I'd really know. I have still had the pain, but mostly only when I've been out and about, going to the grocery store, running errands or visiting relatives. The ads for it on TV do say it's supposed to help pain associated with depression.
It's a serotonin and norepinephrine reuptake inhibitor. The Wellbutrin I've taken for years is a dopamine and norepinephrine reuptake inhibitor. I had the bone pain while on Wellbutrin, but not as badly as recently while I've been off and since it's been better with the Cymbalta, perhaps the norepinephrine may help.
My brain fog is a little better also. The brick wall in my head seems a little more mud brick rather than concrete block. I actually enjoyed watching Jeopardy tonight for the first time since I can remember. I used to love to watch it, trying to beat the contestants and doing quite well, but since I've been sick it's been an exercise in frustration. I might as well have been beating my head against the wall. I know I know the answers but couldn't answer for the life of me. Tonight, I actually came up with a few answers while the show was still on. Triumph!
Attention-Deficit/Hyperactivity Disorder
Norepinephrine, along with dopamine, has come to be recognized as playing a large role in attention and focus. For people with ADD/ADHD, psychostimulant medications such as Ritalin/Concerta (methylphenidate), Dexedrine (dextroamphetamine), and Adderall (a non-racemic mixture of amphetamine salts) are prescribed to help increase levels of norepinephrine and dopamine.
I've also found this link to be very helpful. I did not know that fibromyalgia also caused brain fog. The rhematologist said that I had strong indications of fibromyalgia but that it might be the symptoms of mastocytosis also. I know that I had severe pain in probably 85% of the places she touched. I was very surprised to feel pain in most of those places, since I had simply felt pain seemingly everywhere. In reading the personal stories of a few masto patients, I've seen that several had also been diagnosed with fibromyalgia. There must be a connection.
If I get a chance, I'll ask the doc on Tuesday, though she probably won't know. I had to reschedule from Thursday due to the snow storm we had.
UPDATE: Cymbalta is commonly prescribed for fibromyalgia with depression. See here.
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